Interstitial Cystitis (IC) is also referred to as Painful Bladder Syndrome (PBS) or Chronic Pelvic Pain. All three of these things refer to the same thing, so for simplicity we will refer to it simply as IC, the acronym for Interstitial Cystitis. IC is a disease that mostly affects women, but some men also have this condition.
IC is usually initially treated as a form of recurrent UTIs in women or prostatitis in men. There appears to be about a 4:1 ratio of women to men. When the recurrent “UTI” fails to respond to treatment, the patients usually end up at the urologist for men and the gynecologist for women. Women, after being determined by their gynecologist to not have endometriosis, pudendal nerve neuralgia, endometriosis, pelvic floor dysfunction, or pelvic congestion syndrome, are subsequently referred to the urologist.
Interstitial cystitis is a poorly understood chronic pain in the pelvis or vagina. It frequently runs in families and may be genetic. As the cause is unknown, there have been studies that link IC to pelvic trauma, chronic overdistension of the bladder, repeated UTIs, genetic factors, and autoimmune factors. It may be a genetic deficiency of the glycosaminoglycan layer of protection on the bladder surface. Symptoms may be mild for many years before becoming painful. Often these women just seem to urinate frequently. Some women urinate as often as every hour by day and every several hours at night in the most severe cases. Like small children, I find some mothers who knew every available restroom in town. As the disease progresses, the pelvic pain increases as does the frequency and urgency to urinate. It is often associated with dyspareunia or painful intercourse. The pain after intercourse may last for days. Initially, antibiotics make them feel better. Soon they note that as soon as the antibiotics stop the pain is back in just a day or two. Their urine cultures are usually negative. Often, their doctor has called them back and told them nothing grew on the culture but to continue the antibiotics. Many of these women want to be on continuous antibiotics, but this is not an appropriate treatment.
In men, IC acts as a mimic for prostatitis and is associated with painful ejaculation and occasionally as an isolated, unilateral, or bilateral testicular pain. The same is true in its response to antibiotics as it is with women. There is some relief of the symptoms while taking antibiotics. Usually, the pain has been progressively increasing for months or years. Men come in when there has been a recent, sudden increase in frequency or intensity of the symptoms.
Evaluation of Intersitial Cystitis (Or Painful Bladder Syndrome)
The best place to start is to discuss this with a physician that treats IC. Much of the diagnosis is ascertained by a thorough history. The urologist will ask about frequency of urination, urgency by day, and nighttime urination or nocturia. They will try to find out if there is a history of culture documented UTIs. A sexual history of increasing painful intercourse is important.
Associated illnesses include migraine headaches, irritable bowel or IBS, and autoimmune diseases. It is not currently known how they are related to IC, but some studies have found that 33% of IC patients also have IBS and migraines. Fibromyalgia may be increased in IC patients. This is a condition of increased pain over muscles and soft tissue that leads to sleep disturbance and fatigue.
For some time, insurance denied the existence of IC and required that a bladder biopsy with hydrodistention take place before they would approve the medications to treat IC. Hydrodistention is the stretching of the bladder under anesthesia to measure the capacity of fluid that the bladder would hold. This was felt to be both diagnostic and therapeutic. The IC bladder usually has a diminished capacity to stretch even under general anesthesia. The lining or mucosa frequently becomes reddened and there may be submucosal hemorrhages called glomerulations.
Identification of a Hunner’s ulcer is diagnostic of IC if no other pathology is present. Occasionally, gross bleeding occurs during hydrodistention. If biopsies are taken, they usually show increased chronic inflammatory response in the submucosal areas of the biopsy. Giemsa stains show increased numbers of mast cells in the sub mucosa. These cells contain many histamine granules. This histamine is the same as that which causes nasal congestion with allergies. Biopsies may show erosion of the mucosa as well.
Other Diagnostic Tests for IC or PBS
Potassium sensitivity testing has been around for many years. It was one of the earlier tests for IC. The test is preformed by inserting a small catheter into the bladder. First, a saline solution is instilled under gravity to measure your pain response. This is then drained from the bladder, and a potassium-based solution is instilled. A positive test consists of increased pain with the potassium solution. I have never been a fan of this test.
Installation of a rescue treatment is the alternative option. A solution of medications is instilled into the bladder to see if this combination of bicarbonate, Lidocaine, and heparin temporarily relieves the pain. The bicarbonate of soda solution neutralizes the acid in the urine. The Lidocaine numbs the bladder and works best when the acid in the urine has been neutralized. The heparin is an anticoagulant injection that in this case is used to coat the inside of the bladder. Heparin is felt to replace the missing glycosaminoglycan layer on the bladder surface. In mild to moderate cases of IC, the patients will see relief of their pain in 15-20 minutes, and it may last for many hours. In severe cases of IC, there may be relief, a little relief, no relief, or rarely temporary worsening of the pelvic pain.
Treatment for Chronic Pelvic Pain
Treatment after diagnosis begins with dietary and behavioral modifications.
Many foods may make IC symptoms worse. As a general rule, if it burns your mouth, it may cause bladder irritation. Spicy foods such as peppers and spices may flare-up your IC.
Acidic foods such as carbonated drinks, orange juice, lemonade, grapefruit juice, tomato juice, tomatoes, or tomato sauce may also cause IC symptoms flare-up. Caffeine containing foods such as coffee, tea, sodas, and chocolate may act as stimulants that may cause bladder irritability. While not a food group, over the counter decongestants can cause worsening of IC. These medicines act as stimulants just like caffeine.
Foods high in potassium like bananas and Lite Salt often worsen IC symptoms.
Learning to deal with stress can lessen IC symptoms in both frequency and severity. Stress is often associated with bad situations, but “happy” stress affects IC as well. Both types of stress include adrenaline release. The stimulant affect of this causes an increase in the frequency of urination and the pain of IC. As above in the caffeine section, decongestants fit into this category.
Pelvic relaxation techniques and meditation may help with IC symptoms.
Medications for IC or Chronic Pelvic Pain
When dietary and behavioral modification does not help enough, medications may be prescribed.
The earliest treatments for a painful bladder are no longer used. These included the introduction of a silver nitrate solution into the bladder. This was used to strip off the lining of the bladder. It was thought that when the lining regrew it would be normal. Clorpactin or oxychlorosene was also used for the same purpose, though these treatments have not been used in 10-20 years.
Rimso-50 was the first FDA approved treatment for IC. DMSO or dimethyl sulfoxide (Rimso-50) was used as a topical treatment instilled into the bladder as an anti-inflammatory or antihistamine treatment. It was used alone or in combination with heparin. This is rarely used anymore. The main complaint from people using it was the strong odor of garlic their body emitted for 24-48 hours after each treatment. Liver function testing should be done on patients requiring weekly use of DMSO.
Elmiron (Pentosan Polysulfate Sodium) is an oral medicine found to be excreted in the urine that coats the bladder as a replacement for the missing or thin layer of glycosaminoglycans. Recoating the bladder is similar to a mother’s use of Desitin Ointment in the treatment of a baby’s diaper rash. The layer of Elmiron keeps the urine from touching the bladder and causing inflammation. For people that cannot take this orally, it is sometimes used as part of the IC rescue cocktail in place of heparin. Occasionally, some women experience side effects of nausea or reversible hair loss. Elmiron may take up to 6 months to work, and most people are impatient and come off of the Elmiron before it has a chance to work. The other drawback is the cost of over $400 per month.
Elavil (Amitriptyline) is a tricyclic antidepressant that suppresses pain by way of the serotonin pathway. It also exerts a direct relaxing effect upon the bladder. It relaxes the bladder by affecting the anticholinergic nerve pathways much as the newer overactive bladder medications work. Many IC patients exhibit fatigue due to nighttime urination and lack of sleep. Amitriptyline has a sedating effect and helps restore sleep. Related drugs such as Pamelor or Nortriptyline may be better tolerated if the Amitriptyline is too sedating.
Atarax (Hydroxyzine) is a very old, first generation, antihistamine that is used both for its antihistamine and sedating properties. Remember, mast cells in the bladder lining are full of histamine and are associated with IC on bladder biopsy. While the second generation Benadryl, third generation Zyrtec, and Claritin are also antihistamines, they are much less potent. They may or may not work as well as Atarax.
Overactive bladder medicines may be used but are less effective in treating IC than in true overactive or spastic neurogenic bladders. This class of medications includes VESIcare (Solifenacin), Enablex (Darifenacin), Toviaz (Fesoterodine), Sanctura (Trospium), Detrol (Tolterodine), and Ditropan (Oxybutynin). All are antimuscarinic or anticholinergic medications.
Pyridium (Phenazopyridine) also found in AZO over the counter may help with IC pain. It is an azo dye that acts as a topical anesthetic in the bladder when taken orally.
Many names have come and gone for the medical combination of methylene blue for anesthesia, Hyoscyamine an anti spasmodic, a salicylate for pain, and methenamine as a urinary antiseptic. Urised, Prosed, Prosed DS, Uribel, Utira C, are all essentially the same medication.
Alternative medications used include: aloe vera cactus capsules, chondroitin, and Prelief. I am sure there are others. There is little data to support their benefits, but I do have patients who swear by them.
Postmenopausal women present similarly but frequently get better on vaginal estrogen cream as a topical therapy. While IC or interstitial cystitis may take months to control, estrogen deficiency is usually better in 2-3 weeks or less with estrogen replacement therapy.